Advocacy starts here, it’s all about your diabetes

diabetes advocacyIt is interesting to read about the DAWN2 Study results breaking at the moment and the sessions from the American Diabetes Association 73rd Scientific Sessions Congress – it makes me think about how far we have come in diabetes, both in medical and scientific advances, but also in understanding the need for peer support and connections in diabetes. The Internet has allowed people with diabetes to connect across the world and this has made the movement towards what is called “person centred care”  even stronger, being led by the many advocates out there blogging, tweeting and telling their stories, as well as a group of passionate and caring diabetes health care professionals and researchers.

I was fascinated by the Internet when it first broke into my workplace.That fascination led me to starting Diabetes Counselling Online and at the time, there was no social media. We had an “email buddy” programme, where people would contact me and tell me the kind of person they would like to connect with and I would then try to find an appropriate person to hook them up with – it was like an electronic penpal! People lapped it up. It was wanted. It was needed. I still remember the power and the feeling of being “home” when I first sat down with a group of young adults who also had type 1 diabetes. I had not been a teen who identified with my diabetes.  I hid it, I denied it, I hated it. But by my early 30’s something was missing in my life. I felt alone. I had a yearning to find people who got me. And this drove me to look at ways to do this for myself and for others.

With the explosion of social media this email buddy system is no longer needed and we have also found most people want to connect within social media, preferring this over our bulletin board forums. One thing is clear however, health care systems are still struggling to be truly “person centred”. We hear stories over and over of people not being given information they need, or feeling like they have not been asked how they feel,what they need.  We know that the way we manage diabetes as an individual, often does not fit into a standard box approach. Of course there are many, many wonderful individuals out there who do ask these questions and we also hear many stories about the wonderful positive relationships lots of people have with their diabetes teams. However, sadly this is not the case across the board, so we have a long way to go.

Advocacy starts with us, people living with diabetes. We need to speak up and say what we want. And health care providers need to understand that people with diabetes come to see them not to hear about diabetes, not to learn about diabetes, but to hear and learn about their own diabetes. In this way, it is easier to start with that person and work from them, not a text book.

I for one am looking forward to the challenge ahead and the day when every diabetes clinic is set up with people with diabetes acting as advocates and advisers, where every clinic includes a psychology or counselling visit, where people with diabetes sit on all the boards of diabetes organisations and contribute to policy and services. I also look forward to a cure, to a day where there is no diabetes, but in the meantime, I just look forward to a time where we don’t hear another person telling us that they feel lost. That they do not know where they fit. That they feel guilty, scared. That they feel alone. That they feel unheard.

That will be a good day.

Helen

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